Cradle Song

Sleep, sleep, beauty bright,
Dreaming in the joys of night;
Sleep, sleep; in thy sleep
Little sorrows sit and weep.

Sweet babe, in thy face
Soft desires I can trace,
Secret joys and secret smiles,
Little pretty infant wiles.

As thy softest limbs I feel,
Smiles as of the morning steal
O'er thy cheek, and o'er thy breast
Where thy little heart doth rest.

O the cunning wiles that creep
In thy little heart asleep!
When thy little heart doth wake,
Then the dreadful night shall break.

William Blake

2 Formal Complaint

Wednesday, 30 November 2011
Sorry to overload you guys with official correspondence, but I am doing it to keep the Reform UK ASD Government Policy Facebook group updated on these events.

I also do it in the hopes that maybe a person with less support, more responsibilities and demands on their time might find this useful and at least be able to cut, paste and personalize bits of this (and other) correspondence.

I promise to have cute anecdotes back up as soon as possible!!  (And boy have they been piling up!!  ^ _ ^  )

Dear Mr [MP],

I am terribly sorry to trouble you with a further email, but I wish to make a formal complaint against EAS and [our] Council's handling of my concerns.  I called your office to find out how best to handle this and they suggested I send you my formal complaint for you to forward onto the relevant department, so I am copying my complaint below:

"My family has been verbally lied to since late 2010 regarding provisions and approaches to autism intervention by people from the EAS team, and more specifically Mrs [She-Devil].

She in particular and the EAS team involved with my son also included various inaccuracies (if not outright untruths) in my son's draft Statement for Special Educational Needs and other official documents.

I have had a voluminous correspondence with the MP for [our area], Mr [MP], with the most recent letters dated 2nd, 4th and 29th November 2011.  Ms [Council Lady] responded to him regarding my concerns and her response was filled with numerous inaccuracies.  I have proof backing a number of them.  This means that someone in turn must have lied to her when they gave her the information regarding my son's case.  

In her response (dated 24th November) regarding my concerns to Mr [MP], Ms [Council Lady] seems to suggest that there is no proof to back my assertion that other parents have shared the same concerns (about EAS and [She-Devil]).  I have been in touch with some parents and know that a number of them have raised concerns about precisely this subject matter.

The service we have received has been full of arbitrary decisions that directly hurt a vulnerable autistic boy in urgent need of help to give him the best chance to live a happy and productive life.  This denial of support has been the result of professional shallowness if not incompetence, protected by utter obduracy and lack of consideration.  I regret having to use this language but this is what we have been facing and my son remains unassisted and growing up in this condition. 

I request an investigation into [our] Council's general handling of autism services and complaints, EAS practices and in particular their handling of my son’s case.  I posit that the investigation will reveal an entrenched culture of mendacity and bureaucratic intransparency of the first order."

Thank you very much for all your help and advice to date.  I remain,

Yours sincerely,

[Marsupial Mama]

0 I'm starting to wonder why I bother...

Tuesday, 29 November 2011
Aaaaand here's my answer!

Dear [MP],

I am extremely disappointed, but I have to say that the second part of the letter concerning my son would almost be comic in its false representations of what happened, if the subject matter were not of the utmost importance regarding the care of a vulnerable child. 

 I apologise if I was not clear enough in my 2nd November 2011 letter to you and hope you don’t mind my taking this opportunity to remind you what the main points I wished to address (stated on the first page of that letter) were, namely:
  • To call your attention to the current lack of policy regarding Autism Spectrum Disorders (ASD) by the present Government. 
  • To express my grave concern regarding the appallingly poor quality of the services provided by the Department of Education for children on the autism spectrum, specifically [our] Council’s Early Autism Service (EAS).
  • To request an investigation into EAS’ practices in particular and indeed into the UK framework (sadly, not policy as there is none) of public support on autism.
 My intention in this letter is to respond, per your request, to Ms [Council Lady]'s claims, and to reiterate my strong belief that an investigation into EAS’ practices is amply justified and indeed necessary.

My main hope is therefore NOT to have EAS support reinstated.  While I would be happy for them to reinstate the two nursery visits they have been promising we would receive in January 2011, the main purpose of this letter and my previous one is:
  • To continue to stress the appalling lack of professionalism and spirit of service that are the hallmark of current [our] Council’s autism support staff and activities, as now manifested in this defensive and distortive letter that per your kind request I am responding to;
  • To reiterate and stress the dire need to give many frustrated Autism Spectrum Individuals and parents of children with ASD in [our area] the opportunity to hope for better support, as would inevitably be the consequence of mandating or requesting the investigation into [our] Council’s support system for people on the Spectrum that I respectfully propose and recommend.
At the beginning of page 4 Ms [Council Lady] says "[Marsupial Mama]’s son was referred to EAS in September 2010 and he began to receive support from EAS in October 2010, when he was aged 2 years and 11 months.  There was not a confirmed diagnosis of ASD at this time so his support was based on the EAS Introductory Plan”.  She does not, however, explain why my son's "Introductory Plan" was not changed after he received his diagnosis in March 2011.  Not only that, but as I have repeatedly stated, the EAS team had assured me from late 2010 that my son would receive two home visits and two nursery visits starting in January 2011.  I would like to clarify at this point that my son had been in a private nursery two days per week since April 2010, which he continued with until he started at his new nursery at [his current] School in September 2011.

Further down on page 4 Ms [Council Lady] states that "it was agreed that she would trial one or two sessions of ABA [applied behaviour analysis] alongside EAS".  This is not true.  I actually told EAS during the May 2011 meeting that as the specialists in the USA had strongly recommended I begin on a Behavioural Intervention for Autism (e.g. ABA, my family chose the Verbal Behaviour (VB) approach to ABA), I was in the process of setting up an ABA programme for my son.  As I have stated in my previous letters to you, I have from the outset been told by the EAS team that an ABA approach would be disastrous for my son.  I was strongly recommended against trying ABA since the very first time I asked the EAS team about it back in late 2010 (I cannot be sure of the exact date I first brought this up and do not wish to make an incorrect statement).

The conversation to which Ms [Council Lady] is referring happened in September 2011 between my husband and Mrs [She-Devil], after Mrs [Devil] had already completely withdrawn the EAS service for my son.  I believe I copied you into a letter to her where I objected to that withdrawal of services.  I had never told the EAS team how exactly my son's ABA programme would run since from the outset (late 2010) they had shown themselves to be vehemently against it and berated me in a meeting for even considering it.  I also believed that private decisions concerning our son had (or should have had) no bearing on the services my son received.  Ms [Council Lady] states on the top of page 5 that “EAS is a scarce resource and it is common practice for EAS to prioritise children who are not getting any other service (such as Portage for example)”.  I know I have mentioned this to you before, but I think it bears repeating: Portage is a charity, the services we are providing for our son are privately funded.  My husband suggested trialling one or two sessions of ABA alongside EAS only after Mrs [Devil] had completely withdrawn my son's services on the basis of our pursuing ABA against her direct advice, and even then, she refused even to consider it.

Most of the May 2011 meeting mentioned in Ms [Council Lady]'s letter was spent trying to convince me that ABA skills could not be generalised.  I find this idea puzzling given that a large part of current ABA programmes work specifically on generalising skills.  I work with my son outside of ABA time to teach him those skills he has in different settings across a range of people.  Trainees and other family members are sometimes brought into our ABA sessions just so that a new person may be brought into the mix to aid with the generalising of my son's skills.  The physical location of my son's ABA sessions within our home also change, to further aid with generalising of new skills.

Of all the times I asked why the January 2011 increase in EAS sessions that we had been promised since late 2010 had never materialised, there was never a mention of the explanation now concocted, that "the full plan is usually offered in the year before children enter Reception to those children who are not receiving support through any other intervention".  I am sorry to repeat myself to you, but the EAS team knew from the outset that my son was receiving private speech and language therapy (SLT) and they also knew that I had sought support from a private occupational therapist (OT).

Ms [Council Lady] also states that "when the EAS worker finished her programme in July, she was under the impression that Mrs [Mama] had decided not to continue with ABA.  The EAS team rang the family in September and were surprised to hear from Mr [Bubs] that their son was now receiving 10 hours tuition per week from an ABA tutor."  As much else in this letter, this is plainly baffling if not mendacious. I specifically and very clearly indicated to them during the May 2011 meeting that I would actively pursue an ABA approach between then and September 2011 when BEAS was due to start another cycle.  I told them outright that I would only consider dropping ABA if we did not see any results from it during that time.  But surely, having made my intentions very clear to them and given their outright hostility towards ABA I saw no point in mentioning ABA again to the BEAS worker assigned to my son during that June-July 2011 period mentioned.

On the bottom of page 4 it is stated that "Mrs [Devil] explained to Mr [Bubs] that as they now had an alternative programme at home, BEAS would focus their support on school.Mrs [Devil] explained no such thing, otherwise the letter dated 8th September directed to Mrs [Devil] that I forwarded onto to you on 11th September would have argued (as indeed later emails to Ms [Devil's Boss] and copied to you did) that the EAS team knew from the outset of various other private supports my son was receiving.  These other forms of private support were never considered a problem: only ABA has been. 

I find this all the more incongruous given that Ms [Council Lady] states on the top of page 3 that "Initially EAS focussed [sic] on ABA based style of delivery, but this was subsequently widened to incorporate strategies that have subsequently been recognised by developments in educational interventions to enhance social communication skills." (Emphasis added).  This claim does not appear to be supported by facts, if for example one observes that BEAS training currently does not include any  training or provision of information (or even links) on ABA. This is particularly important in regard to children who (still) can not talk (pre/non verbal) and have very little receptive understanding, as my son did when he first started his interventions. 'Social stories' and other approaches that rely heavily on language are not appropriate or useful for such children or otherwise at an early stage, and this is why behavioural approaches worked best for my son and were more useful.  In contrast, those approaches focusing on social issues and skills can be useful and more appropriate when children are older, have more language, or are otherwise on the upper end of the spectrum whose main problems are social.

That is, different children need very different forms of support. This is precisely a central problem that is created by an early intervention 'support' service that offers every child equal amounts of a range of approaches, rather than getting EAS workers, SLT,  educational psychologists (EP) and family together to devise a programme or choose an approach that would be utilised for the individual child, which is perfectly doable within the same overall resource envelop: it only requires a little more professional diversity and richness, openness and willingness to serve the community.

It is very clear from the response I received that the whole purpose of EAS is to save money and that the approach is not individualized, as all children receive the same number of sessions from EAS regardless of where they are on the spectrum and their individual deficits.  Clearly, children with greater communication problems should be receiving more regular and intensive therapy from SLTs; children with sensory difficulties should be receiving more intensive (or at least some/any!) sensory integration OT therapy; and children who are/would benefit from ABA should be receiving some funding for ABA consultants and tutors to work with parents and schools (as happens in neighbouring boroughs in some cases).

This would obviously then mean that only some children would need EAS (those who actually benefit from it) which would probably be the children with mild autism and some command of language, and who respond well to the TEACCH method (obviously it should be the job of the family and all professionals involved, including medical, to decide what therapies and approaches should be trialled and offered).  Funding should be split between NHS and education.  It is a shame that [our Council] does not seem to fully recognise that Autism is a medical condition.

 There is also a need in [our Council] for small specialist ASD/ complex and severe communication needs nursery schools which are safe, have proper changing facilities and highly trained staff to support children more severely affected by autism and with co-morbidities such as learning difficulties, medical problems, acute feeding difficulties and severe communication impairment.  This would have made our experience so much easier and would have meant that our son could have been properly supported from a young age and would have not continuously regressed and his feeding difficulties may have been properly supported earlier by staff who were trained and able to liaise with the relevant medical teams to properly implement a feeding programme. 

Some of the advice offered by EAS workers such as "try to get him toilet trained over the holidays" when he was 3 were deeply unhelpful as were the "tips" to help treat his severe and complex feeding difficulties given since October 2010.  Also, our past EAS worker refused to accept that my son had indeed been traumatized by a very badly handled taking of blood samples on 2nd November 2010.  She instead insisted that it was purely a sensory issue and recommended we follow a “brushing technique” with no real OT training to speak of.  That advice actively and in a prolonged manner hindered my son’s ability to process and overcome that trauma.  It led to a pronounced subsequent phobia of having his top bare at all, which in turn caused him to become afraid of bathrooms and water.  Only the private OT, his ABA consultant and the advice of Viv Peyton (from Children and Adolescent Mental Health Services) - all people who have only been in our lives for four months at most - were able to aid us in this respect.  Any evaluation of the EAS service should include long term follow ups (after six months, one year, two years etc). This does not appear to currently happen.

On the bottom of page 4 Ms [Council Lady] also says that "this is the policy in relation to BEAS input and is not based on an “vehemently anti-ABA stance within Bexley Council” to parents employing ABA tutors as suggested in Mrs [MM]’s letter, but rather about prioritising a scarce resource as fairly as possible to meet the needs of all children diagnosed with ASD".  My husband was clearly told in a telephone conversation on 6th September with Mrs [Devil] that resources were not the issue, and the withdrawal of services were solely to do with the "incompatibility" of ABA with the EAS programme. 

Mrs [Devil] is then quoted as saying that she was "clear that at no time did she say that the EAS support was being ‘withdrawn’, just that it would be focused on school".  This can be proven to be again plainly untrue.  I called the school before our transitional meeting on 9th September telling them about the issues we had been having with EAS and Mrs [Devil] in particular, and informed them of Mrs [Devil]'s decision to completely withdraw all services.  This, I must assume, can be verified through the school’s own records [yes, I copied the school into this letter].  Mrs [Devil] clearly reinstated a single nursery session a week for my son during that 9th September school meeting when it was previously said he would receive no sessions.

On the top of page 5 Ms [Council Lady] states that "Mrs [Devil] suggested to [the parents] that a face to face discussion would be helpful to discuss their concerns, but they declined."  The reason we declined this face to face meeting was because in our experience with EAS and Mrs [Devil] in particular, we are verbally often told many things that are later denied or rescinded.  That is the reason that instead of agreeing to a face to face meeting, I decided to write to Mrs [Devil] on 8th September expressing my concerns and informing her that I would be forwarding that letter to you.  It is curious that she went to the 9th September transitional meeting at my son's school despite the fact that my husband had clearly expressed our wishes as parents to exercise the right not to have her present at that meeting.  Not only that, but I called the school before the meeting and spoke to [...] (the school SENCO) inquiring who would be present at the meeting.  She told me the list of people and I relayed to her my reasons for calling: to make sure that Mrs [Devil] would not be in attendance as our previous experience with her had been one of extreme unreliability and disruption in the context of my son's development.  Ms [School SENCO] assured me that since Mrs [Devil] was not listed as a meeting attendee, she would not be attending.

Mrs [Council Lady] then goes on to say that "Mrs [MM] later tried to have Mrs [Devil] turned away from a meeting at the school, but was persuaded by the Head teacher that it would be useful for Mrs [Devil] to remain."  This information is also not at all an accurate portrayal of what happened.  Yes, I did try to have Mrs [Devil] turned away from the meeting, but the Head teacher was not even present at the meeting.  It was the educational psychologist Tamsin Cox who persuaded me to allow Mrs [Devil] to remain, and I only did so so as not to distract any more time from the meeting, which Mrs [Devil] had already disrupted by arriving over a half hour late.  (I will forward you the letter where I state this to my son's current EAS worker dated 21st October).

"At the end of the meeting, Mrs [Devil] offered to remain behind to discuss Mrs [MM]’s concerns, but Mrs [MM] declined."  As I have already mentioned, I declined to have any further verbal contact with Mrs [Devil] as those communications have proven to have no weight in future discussions on the same subject, with recollections from the said communications systematically differing wildly from what was originally truly stated.  This is not just my experience but experience of other parents with whom I have been in touch, especially regarding communications with Mrs [Devil]

In the first bullet point on page 5, Ms [Council Lady] writes that "Mrs [MM] states that Speech and Language Therapy (SaLT) services were withdrawn from her son because EAS were working with the child and family."  I did not say that SLT services were withdrawn from my son because of EAS input.  I said that the SLT service was reduced because of EAS input.  I have been told verbally that we have not had much SLT input for my son Juan because EAS was filling that role.  If it is not true that EAS input triggered a reduction of SLT input, then I find it most troubling that my son received only three sessions with the SLT in 18 months

 Ms Murphy states that "Ms [NHS SLT] also offered ‘Play and Sign’ sessions, but these were not taken up by the family.  [...]  Ms [NHS SLT] also offered to share her programme with the ABA team, but this offer was not taken up.Not one of these statements is true.  Mrs [NHS SLT] has had my ABA consultant’s details since September 13th of this year.  The ABA team working with my son all have the new programme and targets she set and these have been incorporated into the programme.  I will also forward the email that proves this and I take this opportunity to apologise for the flurry of emails you will again be receiving. 

As for the rest of the claim made in the above quote, we had been offered on numerous occasions to go to the 'Play and Sign' sessions.  We were at first unable to attend due to an extremely difficult pregnancy which saw me spend over a week in the hospital while the rest of my pregnancy was spent in agony and on bed rest. The birth of my daughter (August 2010) was also very difficult and her safe delivery required a great deal of interventions.  It took me a very long time to recover physically from her birth.  Nevertheless, I took them both to as many ‘Play and Sign‘ sessions as we were able to attend. 

Another reason we were not able to attend as many sessions as we would have liked is that we do not own a car since we cannot afford one.  Getting to the locations where these sessions were taking place was difficult at best, especially since our train station has a lot of stairs and there was no direct bus route to the places where the sessions were taking place.  I would either have had to walk quite a distance with both my children in the double buggy simply to catch a bus, or would have had to change buses.  As my son is able to unbuckle the straps to his buggy and most often has meltdowns getting both on and off buses, too much travelling by bus was very difficult and dangerous, especially since my son has no concept of the danger presented by busy roads and oncoming traffic.  I had no wish to find myself in a position where I would have to make the decision to leave my daughter alone in the buggy while I sprinted off after my son to catch him and try to coax him back by holding his hand.  In any case, all of this was made clear to Mrs. [NHS SLT] from the outset and she has been extremely kind and understanding of our particular circumstances.  We agreed that she would continue to sign me up for the 'Play and Sign' and clinic sessions and that I should just go to the ones where it was possible for me to do so. 

I would like to reiterate that my complaint is not with the SLT services we received, but rather with the Council’s lack of transparency on the issue of how our acceptance of the BEAS service would affect the SLT services we received and their lack of transparency and outright arbitrariness on the many other issues raised in this and previous letters.  As for the SLT services, I only wish my son could have had more input from them, as Mrs [NHS SLT] is clearly a caring and dedicated individual.  It is not for her to decide the amount of services children get, but rather to provide these services.  In that respect she has been wonderful.

Ms [Council Lady] is, however, responding to an "allegation" I never made.  I never said that SLT input had been fully withdrawn, I said it had been reduced as the EAS input was provided.  It is "misunderstandings" like this that have prompted me to conduct all of my communications with and about EAS through emails where I can at least have a written record of what has been stated.

Ms [Council Lady]'s second bullet point where she says “the voluntary organisations are fiercely proud of their independent status and to suggest that receiving financial support from the LA renders them incapable of fulfilling their role to inform and influence local and national social policy is wholly unfair” is in direct contradiction to what I was told when I called a number of organisations to see how best to formulate my response to the unfair treatment that we were subjected to from EAS.  I was informally advised that “(they) have to be careful with what (they) say as the LEA provides a lot of (their) funding”.  That response was what prompted me to make the financial Freedom of Information request that I made.

I find Ms Murphy's third bullet point disingenuous, given that a number of the parents I have been in touch with have told me that they have been to tribunal and written to both you and the Council to complain of their treatment by EAS and Mrs [Devil] in particular.  I believe it is the Council’s responsibility to stock up such complaints and not treat each individual complaint as a new one with no history behind it. 

I know that Ms [Council Lady] had to gather her information through third parties, so I was happy to give her the benefit of the doubt when the accounts she presented were not accurate.  One particular argument of hers, however, has left me feeling deeply troubled: she states in the third bullet point that “clearly, without the names of the parents who are ‘too afraid’ to add their signatures to Mrs [MM]’s letter, this allegation is impossible to verify.”  Yet in bullet point six she says “Mrs [MM] makes use of anecdotal evidence from another parent, much of which you will recognise, as that same parent [who] also wrote you a number of letters raising many of the issues raised by Mrs [MM].”  The contradictory nature of these statements is, frankly, astounding.  On the one hand she calls into question my integrity with the first statement, yet subsequently confirms that there have been other parents with exactly the same concerns as mine.  She has corroborated the allegation which is “impossible to verify” for me.

Not only that, but I am being expected to accept EAS’ anecdotal evidence for their services’ success, yet am harshly criticised for also trying to admit anecdotal evidence.  Also, I have no recourse to "appeal to the Special Educational Needs and Disability Tribunal (SENDisT)", as that particular route is not open to us as a family, until we have had a Statement of Special Educational Needs (SSEN).  I copied you into my 3rd November response to the draft SSEN I was given.

Ms [Council Lady] states in bullet 4 that "all families who receive a service from BEAS are asked to give feedback about their experiences in both formal and informal ways".  I would submit that the informal feedback (which I have been providing since we first started receiving the EAS service in October 2010) is absolutely useless.  You have only to look at the report written by Mrs [Devil] and other members of the EAS team for my son's draft SSEN to see how my own feedback has been twisted to give them a positive spin despite the numerous stern but informal complaints I have made against them.

In bullet point 4 she further states that “Many parents have commented on how supported that [sic] have felt by the programme and how they feel it has helped the whole family.”  I remember how desperate and vulnerable we were when we were first offered BEAS, like most parents with a newly diagnosed/soon to be diagnosed child with ASD.  I also remember how grateful we initially were for 'any help'.  This probably explains parents’ initial happiness with the EAS service, warmly welcoming the promise.  Only later did we realize the lack of information they administered to us regarding what they were offering (approaches and training).  In particular I thought they would be working closely with SLT and other professionals involved with our son and that they would be 'educating' and 'helping' our son via a structured, individualised programme, not just offering 'support'.

In bullet 5 Ms [Council Lady] states that I started a new "Facebook group called ‘Autism Horror Stories from [our] Council, EAS & UK: Time to Fight Back!’"  That was the initial name given to the Facebook group, but I quickly changed it to "Reform UK ASD Government Policy" (RUAGP).  I made the group in haste to try and collect more information about the quality of the services offered both locally and nationally.  I was not aware that creating such a group was an illegal or reprehensible activity?  I had already informed one of your collaborators with whom I have had various telephone conversations that I did indeed start such a group.  As I am sure you can imagine, I have been extremely busy dealing not only with the concerns raised in my 2nd November letter to you, but also actually writing and researching that letter.  Since starting the Facebook group in question, I almost immediately changed the title to RUAGP. 

I am deeply saddened that [our Council] appear to have inserted a 'mole' into my informal, heretofore private Facebook group (until I found out we had been ‘infiltrated’, it is now an open group as my desire to protect parents’ identities seems to have unfortunately failed) which was clearly set up as a safe place for parents to share and express their concerns.  Unfortunately parent's anger, despair and stress on that site, which we all felt free to express, can now be misinterpreted and used completely out of context to paint anyone on it as 'vindictive' angry parents, rather than concerned, anxious parents who are trying to get the best and appropriate support and education for their children.  Local Council’s wastage of time and public funds by spying is not a new issue and has been extensively publicised in the national press.

I have not only made "use of anecdotal evidence from another parent", but I have also written to various parents asking them to send me their official correspondence with the Council, which they have kindly done.  The same themes come up time and again in these correspondences.  Ms Murphy says the "policy of the EAS service is clear", but I had to write numerous letters to various people for them even to deign provide me with a response.  That 'clear policy' is nowhere stated in the literature that parents are given, nor is it posted anywhere on the Council website (at least not at the time of this writing).  I would submit that there is evidence of the BEAS team 'telling lies'.  The fact that they have so far managed to cover this up with underhanded tactics is not relevant to actual (documented) events. 

I have nothing to say on her penultimate bullet point stating "Mrs [other lady] is clear that she did not say explicitly that no one gets the wording one to one" other than to say I am not surprised.  That is the same type of response I got after I researched what an IEP was when I was told by the EAS team that we were having one.  They later denied ever having said that, and yet I now know what an IEP is only because I researched it after being told that an IEP meeting was what we were having.  Another case of 'he said, she said' and further evidence of why I now wish to conduct all my communications with the Council in writing.

The last bullet point she makes on the draft SSEN reports made by members of the BEAS team is utterly preposterous.  Surely the reports written for the SSEN are meant to be accurate depictions of where the child in question is in his progress and how that progress was made (i.e. which learning methods are the ones that work for that particular child).  By saying that "I have spoken to both Ms [Previous EAS worker] and Mrs [Devil], and both are clear that neither were making claims that any progress made by Mrs [MM]’s son was as a direct result of EAS intervention" she denigrates the reason for providing a report in the first place.  What is the purpose of having a vague report on the progress of a child with autism?  Especially when the report is used to make a decision on the special educational needs of that child?  Why write something so misleading if not to minimise the success he has found through ABA and therefore leave ABA out of the SSEN?  Not only is the integrity of the report (and indeed the SSEN process) diminished by the irresponsible comments quoted above, but they are also untrue

 In page 3 of Mrs [Devil]’s report for the SSEN she wrote about the parents’ (our) perspective and said “parents feel the support from the EAS service has helped both them and [The Don].  At a review meeting in May, Mum reported that she was pleased with home sessions and felt that [The Don] was making steady progress”.  (Emphasis added).  It would be difficult to argue that the last line does not mean to imply that I was happy with the EAS sessions and felt that my son had progressed because of them.  Even if one were to try to argue this last statement, “Mum reported that she was pleased with home sessions” is deceitful.

Lastly, on my review of Ms. [Council Lady]’s letter, in the first paragraph after the series of bullet points she states that: "The 2+2 refers to an additional EAS session, which Mrs [MM] maintains she was promised. Yet this is incongruent with her expressed views of the service and the lack of professionalism of the staff."  The 2+2 she mentions have been promised to other parents and then denied for reasons similar to those in my saga (often including the same animosity to ABA), only then to be reinstated to those parents after complaints were made.  The argument she presents in those two final lines is a logical fallacy due to an irrelevant conclusion.  Yes, I am struggling to reinstate the two nursery sessions I was promised my son would start receiving in January 2011, but that does not negate the fact that I consider the service itself to be faulty or the conduct of the staff to be unprofessional.

I hope the above answers the points raised by Ms. [Council Lady] in her letter.  I regret the length and the contradictory statements and claims that are coming to your attention.  My comments are all written fully in accordance to fact, and as I said many of the points I made contradicting their own can be proven, while others inevitably pertain to the uneasy world of their word against mine – and against the heretofore too silent voice of countless families and people with ASD harmed by the obduracy and the practices of some individuals in that realm – just as other honourable public servants involved in this area do consistently provide invaluable help to the children involved. 

It is precisely because of these contradictions – contradictions that such exchanges of letters can only reveal but never resolve – that an investigation or enquiry into EAS’ and wider Council’s provision of support is in dire need of being conducted.

Yours respectfully,

[Marsupial Mama]

4 Snoopy McSnoopers (Yeah, I'm talking about YOU!!)

Saturday, 26 November 2011

So...  Guess what??

In my most recent response from our Local Council, (all communication are currently being done through the MP), they mentioned (accusingly) that they had found my facebook group Reform UK ASD Government Policy.  I didn't know whether to feel troubled (don't they have better things to do with their time, like you know, help the members of the community they are supposed to be serving?) or flattered.

Ever the optimist, I feel flattered.  I'm kind of awestruck that they would go through such great lengths to spy on me.  I must have hit a few nerves.  Guess what?  I'm going to continue trying to hit a few more.  With each new response they give, they just further prove my original points.  With each attempt at whitewashing what has happened (what happens as a regular occurrence with most of the families they serve) and with each attempt at stonewalling me, all they do is fuel me to reach further and further.  I know it's slightly twisted, but they motivate me with their responses.

As far as I know, Freedom of Speech is a right I, my fellow citizens (and people from some other countries as well!) still enjoy.  Also, I find it more than a little disturbing that they are spending our hard earned tax-money on snooping and not, say, helping the disenfranchised people they claim to support...  I don't know, maybe I just have a warped view of the world.

Anyway, stay tuned:  TRUST me, you'll be hearing a lot more about this particular subject.

0 Protest of Autism Speaks

Monday, 21 November 2011
 I support the Protest of Autism Speaks ties to the Pharmaceutical industry the dehumanization of Autistic people.

11 Specialist Support Assistant?? SERIOUSLY??

Okay, I'm, sorry....  I can't even think clearly..  I have been following a lot of new blogs recently, reading up on a lot of perspectives that should not have been new to me, but somehow still were.  I mean, I knew about the neurodiverse movement as such and the principles supporting it, but I'd just never gotten involved in the intricacies behind it: I only had a very superficial understanding.

So I've been hanging out a lot at the TPGA and slowly working my way through the relevant posts and have so far managed to get through 3 and only one of those was from the dialogues.  My vacation is nearly done and there's no way I'll get through the other nine posts in the dialogues before I get back.  (One of my oldest and dearest friends is coming to visit today, I'm excited, we haven't seen each other since summer 2008!!  He's like a brother to me so I'll probably be offline for much of the next few days).  Reading them once I get back will be a lot more difficult since I won't have anywhere near as much time free.

Anyhow, the reason for this post is that I have finally received the first response to a series of Freedom of Information (FOI) act requests that I made.  It's a totally bullshit response (especially since from the outset they have been referred to as "therapists" by all involved.  I am away from home now and do not have their literature available, but I would be willing to bet that in that literature (leaflets) from the EAS team, they alternate between using "therapist" and "tutor" to describe the support being provided.  Not only that, but the response is totally vague.  "A number of people has such and such training"??  "Some individuals have been on PECS courses"???  "Sensory integration training"????  Oh, so you can do a quick course and become an OT, now?????

I'm spitting fire.  I think part of the reason I'm so outraged is that they clearly say they used "applied behavioural principles" for a long period of time and then ADDED a wider range of strategies and approaches.  Anyone how has been following this particular fight with the government will know that I WAS TOLD that setting up a home ABA program would be somehow CONTRAINDICATED to their stupid ass "services"!!!!  I tried to get the She-Devil to commit that in writing, only she weaseled her way out of it, the evil fucking bitch!!  (DISCLAIMER:  anything I say about anyone on this blog is MY OPINION and I am not trying to represent it as a statement of fact.  Clearly, statement of facts need to be pried out like teeth from government officials and people requiring services should be very careful about what they say!!)

Also?  I don't give a crap what experience or qualification the program supervisors have since they neither supervise children nor spend "session" time with them.

Anyhow, for anyone who missed it and has the time to waste reading about 7500 words, here is the link to the letter I wrote to my MP.  More information can be found under the label "withdrawal of services".

Thanks for visiting!!  If anyone DOES read this and has any advice on how to pick their response apart, I appreciate any help I can get, but please don't feel obliged to even if you do find your way here.  I've had maybe  a few broken hours of sleep so am not thinking straight just yet...

I'll get this sorted out soon.  If it's the last freaking thing I do.  This is the FOI request I made:
‘Please could you tell me what experience or qualifications are required to be a EAS therapist working directly with autistic children?’
This was the response I received:

The EAS team are not ‘Therapists’ as they do not offer therapy.  Their job title is Specialist Support Assistant. 

The majority of the team have experience of delivering a programme based on applied behavioural principles between 1998, when the original service was piloted, and 2004 when it began to incorporate a wider range of strategies and approaches.

There is no specific qualification, but previous knowledge and relevant experience along with an understanding of autism are requirements for the job. For example, the most recently appointed person has been with the team for over 3 years. She worked in a National Autistic Society school then for Portage, a home visiting service for very young children with additional needs.

The team have all undergone in-house training on autism as well as attending a range of specialist and specific training courses delivered by outside agencies including:
        Picture Exchange Communication System training by Pyramid Education,
           Intensive Interaction with Dave Hewitt (originator along with Melanie Nind),
            Sensory Integration training.
           ‘the little group approach’ (developed by Gina Davis) with Judy Gillham, head of The Little Group, part of the Eagle House Group

Individuals have also done a range of other courses including:
Advanced PECS, PECS across the Day, Teaching Emotions through PECS
TEACCH with Gary Mesibov (originator of TEACCH along with Eric Schopler)

The programme supervisors have a doctorate which has majored in autism and a post graduate certificate in Autism.

Every effort is made to ensure that all team members have as much opportunity to keep up to date with the latest practise in working with children and young people with Autism.
 I feel like vomiting.

4 All Shook Up

Saturday, 19 November 2011
Google Images

I somehow got myself caught up in a debate on divides within the autism/autistic community.

This is funny to me, because for some time I have been reading one blogger in particular who has been dipping her toes in these particular waters.

I've been lurking on her site, following the links she's provided to debates and comments and read through all of those.  I remember thinking "hats off to you, girl!", cause I had no intention of entering into any kind of debate, thankyouverymuch - if only because I've been feeling quite frazzled and kind of like I have have enough on my plate at the moment.

Well, I'm really glad I did now, regardless of whether I managed to express myself clearly or get my point across properly.

The reason I'm glad is two-fold:  1. I've learned from reading all the different comments and perspectives and 2. because thanks to joining that debate I have stumbled across more blogs to add to my reading list (most of what I read can be found in the blog roll on the right hand side of this page, in the "blogs I follow" section of my profile and in the blog rolls of the Autism Blogs Directory).

One blog in particular has an *awesome* series of posts she wrote during the Autism Awareness month.  I started at the beginning and found it so helpful in crystallizing the way I could now explain certain aspects of ASD and Sensory Processing Disorder when it is "required" of me to do so.  My son's diagnosis is no secret.  So I do talk about autism and SPD a lot, but I've always found myself to be a little lost for words when it's come down to explaining the nitty gritty.

FroggyPrinceMom did an awesome job of putting together an invaluable series of descriptions and metaphors

"Different lights hitting the same mirror from different angles will, in turn, send the light to yet other mirrors, which in turn....until more and more is illuminated -- including, perhaps, some corners that would otherwise have remained in shadow, not yet given what they needed to send out a beam of their own"  FPM

Anyhow, while we're on the subject, I just wanted to post the Spoon Theory (which is useful for explaining to healthy people what it is like to live with a debilitating illness or disability) which I just *love* and also the Fork Theory that was born from it.  I love the Fork Theory for how well it explains the unique position that people with neurological disorders find themselves in.

Please check out the links if you have time.  Happy reading!!

PS.  Edited to add this "debated" post  and the Radical Neurodivergence Speaking blog (one post in particular about "Argument from Tone").

PPS.  Also edited to add where the dialogues begin on the Thinking Person's Guide to Autism.

0 Just Sayin'

Friday, 18 November 2011

He ain't really family if he ain't loyal to you
If they was really soldiers then they would do what we do
And be loyal to crew when crew was loyal to you

6 Marsupial Mama Saves the Day!!

Friday, 11 November 2011
We went to the beach this morning (yeah, yeah, it went great, usual mini-meltdowns (I like to call them hurricane warnings) about not wanting to go, but once The Don got settled, he had a blast!)  Then on the way back we got pulled over by a cop car.

Uh oh.

My mother had forgotten her license at her place (not a good start), and when the cop checked the registration for our (rented) car, he also found problems.  Apparently the photocopy we had was not valid, because it somehow got stained with something and was also not "officially stamped".

My mother had also done nothing wrong, she had no tail lights busted, she hadn't run a red light or anything.  The reason the cop gave was that "she hadn't driven with enough precaution" at a section of the road.

My mother was pretty tetchy to begin with, because she's used to this type of trouble.  The plates on the rental car are always from out of town, and cops here tend to pick on out-of-towners.   When the cop signaled at her to pull over, she said to me "there's no way I'm paying a "mordida" [bribe], he can give me a ticket."

Anyhow, so the cop comes at us and 'gasps' at her lack of license.  We were literally 250 meters away from her place and she said a little impatiently, "oh come on, we can drive up a couple of blocks and I can show you mi license".  I couldn't really hear everything he was saying, but he was being a real a-hole about the whole situation.  Then when he asked to see the registration and how "wrong" it was, my mother just said to him "fine, give me a ticket and I'll pay it".

That's not "the way" to do things here.  Here you're supposed to bribe the cops to let you go cause it's easier than going through the whole rigmarole we were going through.  But kudos to my mom, corruption is a huge part of the problem in this country and she was taking no part in it.  So the cop went back to his car all angry and ready to be as difficult as possible.

When he came back to us he said that since she didn't have a license, that he'd have to call for a tow truck to take us back to the center of town (miles away) so we could hang out at the police station.  He said he "didn't have to follow us anywhere to get anything", that that was not his job and there was no changing his mind.

At this point I was just gob-smacked at how things had gone down.  Betty was asleep in the car and my mom was calling a taxi to take us back to her place while she went with the car to get towed and deal with everything alone at the police station.

The cop's partner had also gotten out of the car and was pretty annoyed trying to get my mother to pull over more into the exact position he wanted us in.  All in all they were being really petty and angry because we wouldn't pay the stupid "mordida".  When I realized just how bad the situation had gotten, I got out of the car and tried to reason with cop #2.

I told him that my daughter was asleep, that we were literally two minutes away from our destination, that I had my license and I normally drive, but that I had been putting Betty down for her nap.  I even pulled out the "disabled" card (no one here knows about autism, apparently, I did try to explain it a lot when we went to the Feria de Chapultepec, but all we got were blank stares.  I think people thought I was trying to tell them my son was artistic and were wondering what the hell that had to do with anything.)  I treated him with the respect he felt he deserved and basically brown-nosed my way out of the situation.  The guy smiled at me and said that since I'd been "very sincere and honest", that he would let us go. 


So I got back in the car, waved and said thank you to them and told my mother we could go.  All this happened in Spanish, which The Bubs doesn't speak.  So as the cops were walking away, he gives me this puzzled look and says

"Hang on..  Did I understand this correctly?  Did you just save the day??"

I turned to him and replied

"Bubbi, I have quite a lot of experience dealing with Mexican cops" [I'll admit it freely, I have a somewhat checkered past to say the least.]

So he goes

"That's great, but it's also quite worrying on another level"....


4 7 Circles of Hell

We finally left Mexico City yesterday. We were almost able to see everybody we had wanted to see and met up with my mother in the afternoon to rent a 7-seater to make the 5 hour trip to Acapulco.

I was supposed to help my mother with the driving, but with all the jet lag etc I was in no shape to drive when we left. The first few days in Mexico City I kept waking up at 2am and the last few days I'd wake up at 430. By the time we had the car rented, baby seat set up and luggage packed, a zombie would have had more life and energy than me!

We were hoping to leave a lot earlier than we did because the highways can get pretty dangerous, especially with all the violence between the Cartels etc.  We'd been strongly recommended by *everyone* not to drive the highway at night.  Unfortunately night fell before we finished our trip, but we were pretty close to our destination and the last part of the trip goes through some busy towns, so it wasn't like we were driving on an empty highway (sitting ducks in a 7-seater filled with luggage that screamed: "please highjack us!!")

The trip to Acapulco was Full of the Loud and Ear-Splitting.  The Don sporadically melted down most of the car ride down, because he *really* hates wearing seat belts.  I unfortunately mentioned that it was just like going on the plane where we also have to wear seat belts, and managed to send him into major stim mode repeating "no plane!  Broken plane!  Plane charging!  Don't want plane!"  **yay me!**  I think I may have reinforced how "terrible" flights can be...  **sigh**  Note to self, "plane" is another trigger word.  AVOID!

Betty was pretty unhappy for most of the journey too, partly cause she's not used to car seats and partly because it was so hot, the poor girl was sweating like a pedophile in a playground.  We did our best to try to settle them down, but Betty wasn't able to fall asleep until nearly the end of the journey.  They both screamed most of the way.

Fortunately we didn't have to go through the full 9 + 1 circles of hell and soon ended up in Paradise!!

When we were in Mexico City, The Don called our hotel room "home".  When we got to my mother's place out in Acapulco, it was *really* hot and muggy and The Don just kept repeating "no Tita's house, go home".  Both the kids were pretty tired though, so we were able to get them to sleep quickly and crashed pretty soon after them.

This morning we went to get pancakes for breakfast (I swear, pancakes fix everything) and a few provisions before venturing out to the pool.  At first The Don just stayed out on this really shallow bit of the pool where the water reaches your ankles.  I was all negative Nancy worrying we'd never get him into the actual pool bit.  But after a few piggy back rides where we'd sporadically go and splash the Bubs and Betty, The Don was cracking up and started getting more comfortable about the water.  By the end of today we were able to get him in the deep part of the pool alternating between piggy back rides and hugs.

One of the "provisions" we got this morning was a pair of Spiderman arm bands and those were a *huge* hit.  It was really cute cause at one point when we were playing he goes up to Betty and said "arm bands missing" cause she didn't have any (we weren't able to find any in her size).  He really enjoyed the pool and even said he wanted "beach towowwow" when up until now he'd shown absolutely no interest in the seaside!  We had him wearing his 3/4 sleeve UV top this morning, but he accepted going to the pool in just his swim shorts this afternoon.

I've probably mentioned before, but we've been working really hard on getting him to overcome his phobia of water and nakedness stemming from the stupid genetic testing he had done last year.  (The results of which were lost by the way).  It used to be that we could barely get him to change from his day clothes into his pjs or back again because he was so afraid of being naked.  This is something we've worked on for a long, long time.

Eventually with different techniques provided by our ABA consultant, the change of clothes became easier and easier until I was finally at the stage where I could change him without too much fuss.  Once that happened, I  started putting him in a t-shirt after school to try to desensitize him to it.  At one point his phobia was so bad that he managed to repress the instinct to put his arms out in front of him when he had his arms bare and fell, and he occasionally injured himself as a result (hence my hesitance to really force the t-shirt issue).  Before, when he'd wear a t-shirt, he'd usually fold his arms at the elbow, tuck his hands under his chin and there was no way of getting him to loosen his arms up even a tiny bit.

After practicing with the t-shirt thing for some time, we were able to get him to this stage:

"Reaching" for a highly desired item
He'd do the same thing during his ABA therapy where he'd also wear a t-shirt.  No matter how we tried to get him to reach for something or copy an out-stretched arm movement, he'd never unfold his elbows and would eventually cheat and move his body to get closer to whatever he wanted, rather than actually stretch his arms.  During therapy one day, as he was wearing his t-shirt he reached for one of his trains, fell and injured his cheek cause he just hit the floor (his cheek landed on one of the trains) without putting his arms out to catch him.  I went running into the room when I heard he'd hurt himself and the therapist was nearly in tears she was so upset by what happened.  He was okay though (his sensory issues mean he has a high tolerance for pain), and after that our ABA consultant came in to do an "intervention" for him.

The intervention was pretty successful (he loosened up a bit more, but obviously this phobia is not something he could quickly get over).  Even so, with all the work we've done until now, we came to Mexico with the hope that the hot weather and fun activities would finally knock that particular issue on the head.

Well, I'm cautiously extremely optimistic.  His arms are a lot looser now even though he does still keep them folded and his elbow crease protected.  Getting him to reach for a desired object when he has his arms bare still takes a lot of prompting and convincing, but he's getting there.  He had a lot of fun today, so I'm really hoping that by the end of our two weeks at the beach, he'll have totally gotten over that phobia and will use his arms as he does when he has long sleeves - normally and without giving a second thought to them!

4 On Birthdays and New Identities

Wednesday, 9 November 2011
It has been a full year since Taz' third birthday.  Up until that time, I knew there was something amiss with Taz.  I had read up on autism and had tried to get him appropriate therapies, in terms of local services being offered and as much extra SLT input as we could afford.  We'd taken him to different specialists who talked about "possible ASD 'traits'".

Really?  How helpful is that, people?  I mean, I know, there's the whole "it's best not to scare the crap out of the parents" line of thinking, but they would have really saved Taz and I so much time if they had just flat out said "the kid has autism.  He needs help, and lots of it.  You have to start dealing with it".

Anyway, for his third birthday, I used my awesome decision making powers to throw Taz a birthday party complete with a pinata, clown entertainment and balloon animals!!  What could possibly go wrong? 

There was a younger (2 year old) kid from his nursery there.  I was kind of shocked by how verbal and how 'with it' he was.  Engaging with the people around him and acting in, well, standard NeuroTypical fashion.  Taz was spinning around the room, ignoring everyone and everything, playing with balloons, trying to get the "forbidden" toys from the clown's reserve.  He didn't care about the pinata, or grabbing as much candy/cheap toys as the kids could fit into their party bags.

I guess he had a nice enough time, I mean there was a birthday cake and lots of treats, but that was the day the penny dropped for me.  I mean really dropped.

Until then, somewhere deep down I kept thinking that it couldn't possibly be autism.  He was way too sociable, too accepting of hugs, kisses and all things affectionate.  That day, I managed to hold it together until everyone left the party.

Once people left, I completely fell apart and cried like I'd only cried twice before: when my brother passed away  (actually a while after I found out the news since it can sometimes take me a while to process emotions.  I was mostly in shock for the first few days after I found out, in total and complete denial.  OBVIOUSLY the dickhead from the morgue had totally got it wrong and it was some other poor bastard lying on the cold metal table).  The second time was when a cousin of mine got murdered (news I got when I was across the Atlantic and 'very' pregnant with Betty).  Anyway, I spent the rest of the afternoon in floods of tears.  The Bubs took the kids out for a walk to give me some time to collect myself and I spent that time crying hysterically on the phone to my mother telling her there was no question Taz was autistic and we needed to do! something! NOW!!!!!!!!!!!

So my mom got in touch with my Fairy Godmother who asked me to send her videos of Taz and basically got the ball rolling for his US diagnosis.  She hooked us up with experts in their field (both in terms of diagnosis and a lady she called the "guru" of ABA.  I know I initially said I was disappointed by the whole NYC trip, but I think my expectations had been slightly unreasonable.  I did learn about the almighty ABA, and a lot of 'background' stuff about how to help him, even if a lot of what we covered was more of the same.

Anyway, fast forward to this year.  Thanks to shows like Peppa Pig and others that have talked about birthdays and birthday cake, thanks to the kids singing Happy Birthday a lot in school and most of all thanks to the incredible advances he's made after just three months of ABA, he knew more about birthdays this year.  Has been a lot more involved in and engaged with our lives.  We talked a lot about his birthday before it happened (we did the same last year, but he didn't really get what we were trying to say).  This year his birthday was a lot more exciting.

We got here on a Saturday evening, jet lagged like crazy.  Taz' birthday was on the Sunday and Bubs and I had the *awesome* idea of taking him to the Feria de Chapultepec, an inner-city amusement park I *loved* going to when I was a kid.

Unlike what I heard about The Happiest Place on Earth from Big Daddy Autism and Autism Army Mom, there was no special pass for kids with autism.  So Taz went running round to each of the rides, sat in them for about a minute, but when the ride didn't start because they'd make you wait for 5 minutes while they totally crammed the ride with as many kids as they could fit, Taz had already lost interest and something else had caught his eye.

LADY!  Get the ride going already!!  (Oooh, is that a train ride??) 

The only ride we managed to keep him on was the merry-go-round, but he melted down the whole time because they took too long to start and he didn't want to stay on it anymore.  Unfortunately we weren't able to get off safely because it had just started that second, so I had to restrain him while he had a total meltdown.  The Bubs was holding onto Betty who was also crying cause she was jet lagged and just wanted to be in my arms.

The one fun thing we did do was go through the crystal maze (also one of my favorites from when I was little).  It was a little scary cause there were tons of people inside running and screaming (Taz was fine, no sensory overload), but we kept losing Taz for a few seconds in the maze.  We all made it out together together though, and Taz really loved it.

After that, we went to have lunch with my mom, her long-term boyfriend, my uncle & aunt,  my cousin (one of Betty's godmothers) and her husband.  It was really great seeing everyone, I just wish we could have stayed longer!!  But the kids were grouchy, jetlagged and the Bubs and I were pretty brain dead too.

They were all so sweet though, really understanding of Taz, really helpful when he'd take off running and my cousin especially was very happy to get some bonding time with her goddaughter.  The surprise??  A chocolate birthday cake!!  We lit the candles and the whole table started singing Happy Birthday.  Taz started freaking out, got dangerously close to a meltdown, so I quickly took on my role as party pooper and asked everyone to please stop singing.  **sigh**

My family is pretty laid back though, so although I think they probably thought it was a bit odd, everyone immediately stopped singing and started cheering him on to blow out the candles.  Taz was so pleased with himself when he blew out the four candles.  We had to ask the waiter to leave the lighter with us so we could re-light them for him.  Taz must have blown out the candles at least 10-15 times and it never got old for him.  He was super excited each and every time.  In the end, we cut off a slice of cake for him and put the four candles on there so he could keep blowing them out and everyone else could tuck into the cake.

Then yesterday we went to see another of my aunts (total legend, I usually stayed either with her or with my grandmother when my brother and I would come to Mexico by ourselves when we were little.  Our parents would catch up about a month later when they had vacation time.  That aunt would always throw me a huge birthday party complete with pinata even though I'd be in Mexico in August and my birthday is actually in June **lol**).  She organized for a lot of family to come over yesterday and even had a birthday cake ready for him and everything!

No prizes for guessing how many times the re-lighting happened!

Taz' little cousins (the children of my first cousins, so I guess his second cousins) were amazing with him.  They just totally blew my mind.  They tried to play soccer with him, did everything to include him, they were total angels.  Because of Taz's speech delay, because we live in an English speaking country, and because all his therapy is in English, I mostly talk to him English now.  He understands both languages really well and will occasionally use Spanish words (though they're a lot trickier for him to pronounce).

I still only talk to Betty in Spanish, so yesterday, before we got to my Aunt's house, Betty did something yucky and I told her not to be "cochina" (literally means a pig, but is also used to mean dirty).  Taz has certain words he thinks are hysterically funny.  This, apparently, is one of them.  The male version is "cochino".  His little cousins twigged onto this and had him in absolute hysterics, gasping for air cause he was laughing so hard each time they'd say it.  Also, the bigger boy made sure to be the one to keep relighting the candles for Taz which was so freaking adorable!!  They all bonded over their mutual love of all things iSomething - never in my wildest dreams could I have imagined it going so well.  It was adorable and made us so so happy.

Okay, can people have some cake now please??

In the end we did the same thing we did in the restaurants a few days before: cut a slice for Taz to have his candles on, so the rest of us could sample the cake.  Taz was so so well behaved.  Bear in mind we spent that whole morning dragging him round one of my favorite Mexico City markets.  When people started leaving, Taz smiled at them all and gave them "kiss kiss good bye" when asked!  He'd do his little Royal Wave and my family cracked up when I pointed it out to them and they recognized it.

Everyone went crazy over Betty, too.  There were a lot of girl cousins there (both from my generation and my kids' generation, even though they were quite a bit older), so Betty got tons of attention and everyone else had a life sized doll to play with **lol**

Anyway.  When I started with this blog, I nicknamed Taz after the Loony Tunes character:

It seemed pretty apt in light of the little bundle of energy he was, just whizzing through our lives often leaving a destructive path in his wake.  OT input and three months of ABA therapy have done wonders for him.  I guess him growing and maturing have as well.  The nickname Taz no longer suits him.  He's outgrown it.

So I'm extremely proud to present you with:

The Don

I kind of see him as a mixture of the two....

PS.  Despite the recent unpleasantness at school, a lot of girls seem to really like Taz and one in particular is the Pepe le Peu to his cat...  He's just as unsuccessful at getting away from her as the cat is getting away from Pepe!

0 'Twick-Tweating'

Note Taz' snugly fitting, recycled costume

I mentioned in a recent post that we'd gone trick-or-treating with Taz and Betty.  Betty didn't make it very far.  Taz and I ended up staying up pretty late trying to go to one more house that would hopefully open it's doors and offer us candy, while the Bubs stayed home with Betty to man the door.

How the hell do you open these things??

Getting Taz in his costume wasn't straight forward, the Bubs tried to dress him while I was getting ready.  Taz kept taking off his costume even after seeing Betty in her costume.  Fortunately, (and just like last year) once he saw me in my full costume and make-up he decided maybe looking like a freak wasn't such a bad thing and off we went into the night.

We met up with Petal (see link above) who was dressed as a very fetching pirate-ess.  The kids were so so cute.  There were times when Petal's mom and I would just stand back at the top of the driveway and let them knock on the door themselves.  Then I'd have to remind Taz to say "trick-or-treat" and "thank you", but he also more or less took his cues from Petal.  We live in the UK.  Halloween is not a big thing there.

A lot of the houses straight up have "No Halloween" or "No trick-or-treat" signs on the front of their houses!!  We moved to the house we live in October a couple of years ago and the first time I saw one of those signs I nearly peed myself laughing and tried to take a picture of it to send my American cousins, but right when I was pointing the camera at the door, I saw a little old lady peering out of her curtain.  Since she was a close neighbor, I feigned insanity and never ended up taking the picture. 

So trick-or-treating was a little hit or miss.  9 out of 10 houses either had their lights off (no go areas) or even some that had their porch lights on would ignore the doorbell.  It was pretty disappointing for the kids, but there were a handful of really cool houses that went all out with decorations, one even had a dude in a grim reaper costume with the flashlight shining under his face looking pretty spooky.  Petal needed a lot of persuading to go into that house.

Taz?  All he could think of was the candy at the other end of the drive.  It was kind of funny cause another house had a spooky bowl to hand out candy with.  It had scary decorations, flashing nights and spooky noises.  It kind of freaked Petal out a little and she did a quick grab for the candy and then got as far away from it as possible, but again, Taz didn't see no bowl!!  He just saw candy!!  And took his sweet time choosing what he wanted too!  **lol**

I was a little surprised by the things that were being offered up as "treats".  Unwrapped candy (you know, like a big bag of Haribos just emptied into a bowl), little cupcakes and things like that.  I don't remember it being like that in the US.  I asked my cuzzy (who was born and raised in Colorado, but like me, is of Mexican and Lebanese heritage, and has deep, deep roots in Mexico) if that was normal.  Her response was:
HELLZ no, muffins aint normal!  in america that shiz gotta be wrapped or we fear there's a razor blade in it.  apparently i woke up on the snoop dogg side of da bed today.
I love her, she's so funny!  She lives in France now, and they celebrate Halloween even less than the Brits, so poor thing, I really felt for her this year since Halloween has always been her favorite holiday. 

Anyhow, our house was also a beacon for trick-or-treaters since we put Jack-O'-Lanterns on top of our doorway.  (Learnt our lesson from the first year we lived in that house where the little [expletive] vandals would steal my freaking Jack-O'-Lanterns and trash them further down the road.)

Try reaching these, b****es!!

Anyway, pretty much every day since, Taz been saying he wants to "go twick-tweating Petal" or "green hair, twick-tweat"  **lol**  A lot of people also didn't get my disguise **disappointed**.  I WAS THE JOKER'S SISTER FOR GOD'S SAKE!!

9 Against the Bubs' Wishes...

Saturday, 5 November 2011
Much against his wishes I'm here to tell you that we're off at the butt crack of dawn tomorrow.  He's paranoid about people finding out we're gone and looting our house.  Personally, I think Mr Sprinkles is more than capable of scaring anybody off, despite his advancing years and the whole being locked in a cage thing.  Also, I've never posted personal details other than my email anywhere.  I don't put phone numbers or addresses anywhere, so I don't see what the big hoopla is.  It's not like we even have a car that could get stolen or a decent stereo system.  

We're going on a transatlantic flight to visit family, complete with stop-over and many opportunities for sensory overload and a total breakdown. 

I think we all know breakdowns = so much fun.  Oh no, wait...  They don't...

Nevertheless, the trip will be worth it.  We haven't been back to Mexico in forever and little Betty hasn't even met some of the family yet!  Plus Taz will get over his fears of water and nakedness while we're there.  That's what we've decided, so that's what's gonna happen.  **tries to hide trembling hands**

So, here I am, still sleep deprived cause I can get overtired too.  Then I get high strung and it's hard to settle back down.  Plus, in his infinite wisdom, the Bubs thought it would be fair if he packed his stuff and I packed mine and the kids stuff...  Cause, you know, they are MY kids and all....  I didn't need any help making them (???)  Also, I think this is a good time to mention he slept through most of both labours.  Yes.  Plural.  I rest my case. 

Anyhoo, I have a Gruffalo Trunki chock full of books, toys, any thing I could think of to shove in there, all protected by supazip bags, so my OCD lil' heart can rest at ease.  Not only that, but Taz has really loved getting pulled round the house on it, so hopefully he won't get all floppy at the airport.  Susan said he's like jelly when he gets like that, he slips through your fingers like water, when it gets really bad I have to grab one arm and one leg and carry him like that while he's thrashing to get free.  But we won't have that this time.  This time we also we also have the big guns - the all powerful iThingies.

Last problems?  Can't find the camera or Taz' headphones...  And I'm still up at 1:15 when I have to get up in 4 hours... 

**fingers crossed this goes better than our last transatlantic flight!!**

Bye everyone and hope y'all have a great weekend!!

PS  **Mmmmm, taquitos de canasta and real Mexican food**

3 Guess what I was doing at 3:58 AM

Friday, 4 November 2011
There's a deadline for challenging the draft Statement of Special Educational Needs (SSEN) that I have been talking about recently.

The deadline is today.  I realized this yesterday.  (I double checked the calendar just to make sure I had counted the number of weeks right. Turns out I hadn't.)

I immediately sent an email to our SSEN Case Officer (CO) (part I of the letter below) and then tried calling her to make sure that this would be accepted and to confirm that she had received it. She wasn't in the office, but Someone Else took my call.

I then sat there for a little bit, realizing that I had done the two big things I had to do: write to the MP and challenge the SSEN.

I didn't really feel happy that the letter I had sent the CO had been a full response.  It had been my intention to go through each one of the reports and pick them apart.  I even got Bubs to buy me a highlighter pen and some of those little stickers you use to mark pages in books or documents.

Most of the reports had various pages of highlighted material with stickers (in case I have to take it to Taz' review meeting in December, so I can quickly flick through it and see what my notes have been.  In fact, I should go through it again and stick an alternate coloured sticker for each report.   Don't know why I didn't do that the first time around!)

Anyway, I thought what the hell...  I'd already spent the past few weeks in a sleep-deprived mess, what difference could one more night make?

So I wrote another, more detailed letter to the CO, and I copied in the She-Devil, Person A and B from yesterday's post (you can find it in the link above), and, of course, the MP and Principal.  I wrote them a quick note beforehand warning them that I would be forwarding correspondence, but that it was really just for the record and I wasn't necessarily asking them to read it.

For those of you who did manage to read the whole of yesterday's post: (congratulations! **lol** That's probably the longest thing I've ever written and proofreading was a killer!!)  I also apologize, because I did lift a couple of the relevant sections from the letter to the MP so as not have to write it all over again.  Only this time with my mind a lot more absent from sleep deprivation!

I was literally falling asleep proofreading it at the kitchen table, but I needed it to be sent before the working day started today to avoid any chance of them saying something stupid like "it should have been turned in before the deadline, we can't accept it".  The working day on Friday doesn't start till 8 for them, which means I handed it in with 4 hours to spare.  So there.

An actual picture of me asleep at my computer

I've tried to re-read it a couple of times today and found horrible mistakes in it, (grammatical etc), but I can't really be sure how bad it is till I get more a little more than 3 hours sleep a night.  At the moment I feel almost delirious from the lack of sleep and can feel my eye twitching, so I'll shut up now and just post the stupid letter.

Dear Ms ['Helpful' CO],

I called your office to confirm that an email response to the draft SSEN by way of email would be acceptable.  Your colleague [Someone Else] assured me that an email response is absolutely fine.  I take this as confirmed unless you kindly indicate otherwise. I would also take the opportunity to offer comments on Ms [Devil]’s Progress Report.

I      Draft SSEN Statement

I received the proposed Statement for my son, [Taz], and wish to make a representation against the contents.  The reasons for this are:

1.   It does not include a "one-to-one" provision.  I know you told me over the phone that the specific wording of "one-to-one" is never used in the Statements.   Nevertheless, having spoken to other parents of children with ASD, I learned that that wording does get used within [our] Council, and that without that specific wording (which many have had to go to tribunal to receive) my son will not get the quality one-to-one support that he needs, which are clearly outlined by the reports from various professionals though out the draft SSEN that we received.

2.  It does not make a provision for his whole nursery day.   He is at school for 17.5 hours in nursery and will need that support the entire time he is there.   I am confused why I was told that only 12 hours were put on the report due to the "unstructured" nursery time, because it is precisely during that "unstructured" time that children with ASD need the most support to better navigate their social environment.

3.  It does not include a provision for ABA, which, in my son's case is clearly the only thing that has helped thus far, as evidenced by the minimal progress he made from summer 2010 when he first started receiving "support" to July 2011 when he started his ABA programme.   Since July 2011 his progress has been astounding.

4. Finally, I would like to note that in some of the reports included within the SSEN, some of the authors say that since June 2011 (when my son first started having pairing sessions with his ABA therapists, though formal ABA sessions did not commence till July), my son has made massive progress which I have been really pleased about.   Only [the ed psych] said that we felt this was due to the ABA therapy he had been receiving.  Everyone else who broached the subject implied that it was thanks to their efforts.   I find this disingenuous and most distressing, considering the importance and formality of these documents and proceedings.

II      [She-Devil]’s Progress Report

I should also refer to one report in particular, Ms [She-Devil]'s, which stands out as being grossly inaccurate and misleading. Let me say why:

1.  She states in the first paragraph of her report that "this pattern [the EAS six week cycle we were offered] was repeated three times over the year [...] and [Taz]'s mother reported she felt [Taz] had made progress."

I must say this is wholly untrue bordering on mendacious.  From the outset I have expressed my grave concerns about the inadequate care my son was receiving.  I have been researching the Autism Spectrum since we first suspected ASD in my son when he was 18 - 24 months.  All the scientific literature on ASD says unequivocally that intensive intervention is needed, based on a minimum of 20 hours per week.  I have thus many times voiced my disbelief and deep dissatisfaction at his lack of care.  I have also repeatedly stressed to the EAS team that if my son made any progress at all during the period from summer 2010 - June 2011 it was only because of the remarkable input from his private SLT.

2.  Ms [Devil] states in the last line of page 2 that "[Taz] is toilet trained."  Also totally untrue, he is still in nappies as you can confirm through our wonderful Health Visitor, Ms [You Know, Actually Helpful].

3.   At the top of page 3 of her report, she says that the "parents feel the support from the EAS service has helped both them and [Taz]."  Writing this requires enormous audacity and is deceptive to patients and supervisors alike; please see the second paragraph of point 1, above.

4. In her recommendations on page 3 she says that "it is important that staff understand the nature of his difficulties; how these affect the way he thinks and learns; and the educational implications of this. Attention needs to be paid to his learning style".

Here she recognises that interventions for children with autism should be highly individualised, reflecting the wide heterogeneity of assessed and expressed deficits found in the children.  But this remark is vacuous if not applied in practice, and it comes into direct contradiction with e.g. her original decision to entirely withdraw all of [Taz]'s EAS support because we privately provided Applied Behavioural Analysis (ABA) therapy.   A full withdrawal that she turned into partial (a single nursery visit a week) only after I presented my robust and reasoned challenge to her action especially in light of the fantastic progress he made with this intervention and advised her that I would inform the MP for [our Council], Mr. [Marsupial Mama's MP].

Encountering the vehemently anti-ABA stance within EAS has been puzzling, considering that Behavioural Interventios for Autism (BIA) are based on an applied natural science (Behaviourism) and not merely an ‘eclectic approach’, such as the one EAS uses.  Nor do these ‘eclectic approaches’ have the same type of rigour in terms of specificity of targets, session-to-session data-taking or accurate measures of problems or progress within the programme that ABA has (I can provide documented proof of this if need be) whereas EAS’ data-taking protocols are haphazard at best and at worst nonexistent.  There is indeed no evidence for the efficacy of an ‘eclectic’ range of approaches and still less for interventions that are only provided for one hour per week (as my son is currently receiving).  The ‘assessment’ procedures used by EAS – conference presentations, subjective reviews or anecdotal reports (as opposed to peer-reviewed published research) – do not count as serious assessments.  I would also like to point out that the Royal College of SLT also advocate BIA (specifically ABA), as an appropriate intervention to be carried out 20-45 hours a week.

5.  At the bottom of page 3, Ms [Devil] states that "use of a highly structured approach [...] will enable [Taz] to know in advance what is expected of him and what will happen next"

In that section, she specifically mentions the [sorry, don't want to get into an argument about methods - different children = different needs, right? Plus you don't have just one therapy for ASD, you have multiple and they all have their good points] method.  BIAs such as ABA go a step further: not only does a BIA/ABA intervention enable him to know what "is expected of him and what will happen next", but they actually teach him self-care, social, and communicative skills – and also often improve symptom severity and maladaptive behaviors.

6.  It is troubling in the extreme that so many factual errors should be made in such an important part of [Taz]’s continuing assessment and evaluation, and worse so coming from a person who is in a position of authority (i.e. the head of EAS).   Instead of taking this task seriously it appears that she has taken a 'cut-and-paste approach' to his SSEN report drawing from standard(-ized) reports, much like the 'eclectic approach' she seems to favour for children with autism. I find this most disturbing.

7.  Finally; the SEN Code of Practice (ratified by the: SEN Disability Act 2001, Disability Discrimination Act 2005, Education Act 1996, Equality Act 2010) sets out two important points: firstly, that parents should have knowledge of their child’s entitlement within the SEN framework.  In this respect I did not have this knowledge, particularly with regard to the unqualified autism intervention given by EAS.  Nor was I properly and opportunely informed that accepting EAS input it would result in a reduction of qualified SLT support.

Secondly; the SEN code stipulates that parents should be able to make their views known about how their child is educated.  Given the enormous progress my son has made with ABA, I think the Statutory Assessment of Special Educational Needs should include within my son’s SSEN a provision for ABA therapy, since that is what has clearly been most successful for him.   I am, however, thoroughly disappointed that my son’s Statement of SEN contains no provisions to that effect.   I respectfully submit that this violates my rights as a parent as specified in the SEN Code of Practice.

Yours sincerely,

Marsupial Mama
The Clod and the Pebble

"Love seeketh not itself to please,
Nor for itself hath any care,
But for another gives its ease,
And builds a heaven in hell's despair."

So sung a little Clod of Clay,
Trodden with the cattle's feet,
But a Pebble of the brook
Warbled out these metres meet:

"Love seeketh only Self to please,
To bind another to its delight,
Joys in another's loss of ease,
And builds a hell in heaven's despite."

William Blake
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